Thank you, Hilary. I’ve dwelt on this over the years. It’s quite likely that in another era, we would have been urged to give up one or both of boys in this way.

Troublingly, even though the institutional model is gone, I’m not sure if the mindset is. We were pressured by a GSE caseworker to place our younger boy in a residential school in West Auckland. It was awful, awful advice that would have greatly harmed our son had we not rejected it out of hand. I still worry about parents who might have taken that dreadful woman’s advice because they didn’t know better.

There’s a recent two-part BBC documentary called Disowned and Disabled about institutionalised kids. Part 2, the disability one, is in full on YouTube:

My brother was diagosed with autism in the early 1970s. It was recommended to my mother that he be put into "care". She declined and she and my father did an amazing job of bringing him up to be able to deal with the world pretty damn well.

A complete stranger waiting ahead of me in a Post Office queue, suddenly swung around with cell phone in hand. She trembled as she told me that she had just received a text from her daughter who had just given birth to a Downs Syndrome girl. I was able to tell her that for many families faced with what seems like a catastrophe, it can instead be part of an enriching family experience where siblings and relatives rise to the challenge and learn to love and be proud of each tiny advance that the child makes. Perhaps it puts into focus just what are important values.I wonder if Hilary's Mum found enrichment? Bet she did.

Nice post Hilary about some of our silenced lives. I never cease to be amazed/bemused at the huge variety of ways that disabled lives have been, and continue to be, made invisible within a society we inhabit. The institutions such as you describe have had a long shadow and looming impact. And the 'institutional thinking that has informed these places has been present in a huge variety of settings and for disabled people across the whole spectrum. And yes, Robert was the first learning-impaired person to speak at the UN.

Though it’s great that New Zealand closed its last institution (Kimberley Centre), being institutionalised is not just about the buildings - the bricks and mortar - it’s also about values, beliefs, actions and activities. It’s about the way things are done, the decisions that are made, who makes them and who has the control. In New Zealand we still need to work hard to ensure that people with disabilities do not continue to be institutionalised even though they live in community settings.

Thank you for the nice comments. It feels quite vulnerable even writing about something as common as eczema. It raises a lot of deep memories.There are hardly any photos of me as a baby and in the few that exist I look very grumpy.

Our daughter had eczema, probably my defective genes. We beat it now with avoidance of some acidic fruits like braeburn apples, all foods with MSG, the occasional dose of cider vinegar and plenty of sleep - stress makes it worse. I also had an aunty who was subjected to ECT following the harrowing effects of losing her child to the state as a teenager, during the days of shameful childbirth out of wedlock. She never really recovered from that. Great our society has grown-up in many ways.

It wasn't only learning impaired children that were put into institutions - I recently met a man who, during the course of an interview about gardening, revealed he had been put into a welfare home at age 14 because he refused to attend school. He was interested in marine biology to the exclusion of all else (and was probably bored by what his peers were doing and was being bullied) and was basically teaching himself. They finally discovered at the home that he had a massive IQ. These days he might be recognised as "gifted" but back in the 1960s no one knew what to do with him. He was sent home after the IQ test with an apology and permission to study as he wanted. He has since had an unconventional career path, including 15 years managing a recycling centre staffed by IHC workers, a job he loved.

Right now I'm seeking second opinions from health professionals as to whether I'm officially on the autism spectrum. If it turns out I am, then years of 'tiger mothering' will be proven worse than useless. In Japan, the hikikomori phenomenon is a direct result of such a bigger-hammer approach towards the square pegs, coupled with the Lost Decade following the bubble burst.

Renee - Good for them. Brave too. Were your parents early members of the NZ Autistic Society (as it was then)? I have heard from others that it was very hard to fundraise or gain acceptability for autism as in those days it was deemed to be the parents' fault.

Russell - thanks for posting that video. Paul Hunt is a very significant figure in the rise of Disability Rights and the academic Disability Studies. Good to see that context. Many parallels with NZ although our laws were slightly different. I think I have also heard Mabel talk at a conference several years ago in Australia. One of the first people I heard talking about their institutionalised lives. Simple and shocking relevations.

When Robert reached 15, the State tossed the angry teenager out of care. The anger was not surprising as he had been denied not only human rights, but culture and identity. He relates that he had not experienced 60s music nor heard about the Vietnam War, but most affronting was that he didn’t know about the All Blacks. So while I was playing Beatles records, marching against the war, and protesting against racist rugby tours, institutionalisation had denied him this basic knowledge of the world

My linguist brother talks about how vocabulary is an important part of thinking.

he refused to attend school. He was interested in marine biology to the exclusion of all else (and was probably bored by what his peers were doing and was being bullied) and was basically teaching himself. They finally discovered at the home that he had a massive IQ. These days he might be recognised as “gifted”

And/or on the autism spectrum. The "to the exclusion of all else" is a bit of a clue. I'm very glad it worked out well for him.

Yes, the Mazengarb Report is quite extraordinary. I refer to it when I teach about moral panics and the students look on with bewilderment, even though I stress that panics about ‘dangerous youth’ persist.

Josephine and I recently had remarkable insights into how local communities can support —and even treasure–vulnerable people, with the death of my sister Diana Golding in Grey Lynn in March. I knew about her growing up years, in difficult times (being born with club feet and diagnosed as schizophrenic in her mid-teens) but much less about her life in recent decades, when she became known as The Queen of Grey Lynn. We were expecting a few people to come to her funeral (having rung people in her grubby little address book) but there were more than 70 crowded into the room. The Grey Lynn Library closed and all the librarians came. There were local shop-owners, case workers, locals who had befriended her, street people, health workers. The two local policewomen came along to pay their respects. People told stories of her and played music. Indeed, after an hour of people standing up and telling stories, the funeral director was giving us frantic hand signals from the back, to draw things to a close.My sister died with few possessions but extraordinary mana in her community. We had to account for her funeral expenses but it seemed a small price to play.

A friend of mine lost her mother at a young age. She told me her father was encouraged, not sure by whom, to put the kids into care rather than raise them on his own. Luckily for her that didn't happen.

Not a direct response folks, sorry. But I just have to vent my frustration, anger and concern at the news that no-one at the respite facility which left a 15 year old to drown in the bath is to be charged for the negligence which caused his death. http://www.stuff.co.nz/national/9981142/Anger-over-lack-of-charges/I know we don't have the whole story, but if there's some justification for this you'd think it would have been provided. If a 15 year old boy being treated in hospital had been left in a bath and drowned there would be serious consequences and a public outcry. I can't help feeling that the authorities have made a value judgement on the basis that this child was disabled.

Absolutely correct Angela. Nathan's death does not warrant a criminal charge because he had a disability. Had he been an 'able' child in day care for instance...the brownstuff would have hit the whirly thing for sure.

Our family new this young man. No way should he have EVER been left alone in a bath. His mother gave written instructions to the 'care' facility to that effect.

Even without those instructions...it was patently obvious to anyone remotely competent in the care of those with CP that he was at risk of drowning.

These 'facilities' must not be too choosey when it comes to hiring 'care' staff.

The best and the worst is drawn out in those who care or are responsible for our most vulnerable. And Tokenui is still happening, just in other facilities, and less obviously. We can't tolerate these situations, if we know or suspect we really must speak out or we're condoning it.

When abuse happens and is reported to the agency and then to the govt, the actions are not of acknowledgment, the agents wrongdoing is sanctioned and supported by attempted coverups and excuses. I am not saying the individual abusers heads should roll. I am asking that they are taught right from wrong by example of their supervisors, that they learn that harming others is wrong. For how can they learn compassion and kindness unless our health system stops worshipping a funding model, stops making up outcomes and starts remembering what the word healthCARE means .We have a healthcare system that was designed not to point the finger or punish but to learn, this freedom allowed those in positions of power to correct but the corrections are not happening (and the life costing "mistakes" are purposeful) . The philosophy in these state org's has become one of saving money =death is cheaper than life. What happened to HDC patient rights, I was told by the HDC in a colorful way that they do not apply if you are disabled, we can see there is a disproportionate number of "incidents" with vulnerable patients .